Topics

CF center care
Hello, my daughter is followed at a certain CF center. I am in contact with other parents whose children are followed in other CF centres. We discuss together the ways how the monitoring of our children is proceeded. I realized that the monitoring of my child was not as regular as others’. Her ...
13.08.2013
Osteoporosis – necessary measurements
[Please note that the original German question also included questions about the reimbursement from the health insurance. These parts were deleted from the question and answer since they are not relevant for the cross-national Central Archive.] Dear expert team, About the topic CF and ...
14.08.2013
National laws for CF patients
Dear representative, I know that in Italy there is a law that governs the CF treatment clinics and other aspects. Are there other similar laws in different European countries? We would like to establish an Israeli law, and for that we wish to gather all equivalent laws. Thank you in ...
12.08.2013
Pulmonary rehab for CF patients
Can you send me the latest guidelines or focused reviews on pulmonary rehab and CF patients? Or just plain pediatric pulmonary rehabilitation.....
31.07.2013
Searching for a specialized CF physiotherapist
Hello my 8y. daughter has three physitoherapy sessions per week. I'm desperately searching for a physiotherapist who knows the clearance techniques in my neighborhood [31300 Toulouse Casselardit, France] and set a physiotherapy session at school. Thank you for your reply.
31.07.2013
Trip to England
My 16 year old daughter is going to spend two weeks this summer in England in Bournemouth. Is it possible to find a respiratory physiotherapist or will she have to do the physio herself ?
31.07.2013
Vacation in Italy
Hello, We are going on vacation for 15 days in Italy. Are there any trained respiratory physiotherapists and what about the the French Health Insurance coverage regarding the care expenses reimbursement?
30.07.2013
Cystic fibrosis
DEAR EXPERT TEAM I would like to know more about the availabilty of Kalydeco® in Bulgaria and if there will be any point for someone suffering from CF with the mutations 621+1G/T, N1303K to try this medication and also if not suitable what other treatment should we look for in order to keep ...
22.07.2013
change doctor
Hello, I am the mother of a 4.5 year-old little girl. We got to know that my daughter has CF; she has to take treatment. She is followed up at a female physician X but the concern is that I don’t get along well with her doctor. She speaks to me badly and reproaches that I do not care for my ...
15.07.2013
Disease severity degree
Hello, my 2-year-old CF daughter requires since birth very intensive care. The disease leaves her no lull. Today I am very worried about her life expectancy ... What are the criteria for severity of the illness? Are there still children who die young? Thank you in advance for your answer to this ...
15.07.2013
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